Data Management Resource

NINDS Repository

Since 2001, the National Institute of Neurological Disorders and Stroke (NINDS) has funded a contract for the NINDS Human Genetics Repository, to the Coriell Institute for Medical Research. The purpose of the repository is to receive, process, store, and distribute biospecimens resources that can be shared by the neuroscience research community, and to encourage the research efforts of established scientists, junior investigators, and scientists with novel approaches. This resource is an essential part of the infrastructure for the PDBP and will work closely with the PDBP DMR to assure standardization of biological sample collection, protection of subject privacy and rights, and transparency regarding availability of samples for Parkinson's disease biomarker discovery research.


Number of PDBP Biospecimens Available through the NINDS Repository



Number of unique biospecimens from projects in the PDBP B = Baseline, 6 = 6 months, 12 = 12 months, 18 = 18 months, 24 = 24 months.

  • Use the Query tool in the PDBP DMR to find samples in the NINDS Biorepository PDBP Sample Catalog and request samples through the PDBP Order Manager.



PBDP Collection




Extant Biospecimen Collections





NINDS Repository Parkinson's Disease Biomarkers Program (PDBP) Pooled Biomaterial

Biospecimen pooled references have been prepared for plasma and serum, to provide researchers access to shared reference samples that can be used for normalization and standardization across sites, platforms and assays. When individual investigators assay or request access to a large number of PDBP samples (>50), they will be required to measure reference samples at the same time, so that datasets returned to the PDBP data management resource will include reference sample data for measurements of the proposed biomarkers. Should another site (Site 2) seek to replicate an observed biomarker association from an originating site (Site 1), reference samples measured at Sites 1 and 2 will provide a measure of the technical uniformity of measurements across assays and/or sites.

Pool 1:This reference sample consists of pooled plasma from 450 subjects (231 PD, 81 Normal controls, 38 frontotemporal dementia, 100 ALS). 56% of the subjects are male. The mean age is 65.55 years (10.99 years SD). Blood samples were collected between 2007 and 2011 at the University of Pennsylvania clinics, and all were spun down (3,000rpm (1,962rcf) for 15 minutes at 4°C) on the day of draw, with tubes kept on ice until the spin. These samples have undergone one freeze-thaw prior to their constitution into a pool for assay cross-validation. Pooled samples were prepared by the University of Pennsylvania and received by the NINDS Repository in1.5 ml siliconized cryotubes that are stored at -80°C. Mean values and CV's for two plasma proteins measured in quadruplicate identical aliquots of Plasma Pool 1 are: Apolipoprotein A1 0.63 mg/ml with a CV of 0.06, and Epidermal Growth Factor 58.82 pg/ml with a CV of 0.05.

Pool 2: Samples are from the UT Southwestern Alzheimer's Disease Center and were thawed on ice, and pooled prior to distribution into 0.5 ml siliconized cryotubes (Bio Plas Inc) and storage at -80°C. Samples are from 15 normal control subjects, who have been defined as normal for up to 17 years (range is from 34 days to 17 years) based upon examination at the UT Southwestern Alzheimer's Disease Center. The mean age of the subjects is 70 years, with a range from 65-75 years of age. Blood samples were collected between 2012 and 2013 into BD Vacutainer K2 EDTA tubes, followed by inverting the contents 8-10 times. The collection tubes were kept on ice for up to 30 minutes, prior to centrifugation (1318 x g (3400 rpm) for 10 minutes at room temperature). These samples have undergone one freeze-thaw prior to their constitution into a pool for assay cross-validation.

Pool 1: Samples are from the UT Southwestern Alzheimer's Disease Center and were thawed, and pooled prior to distribution into 0.5 ml siliconized cryotubes (Bio Plas Inc) and storage at -80°C. Samples are from 15 normal control subjects, who have been defined as normal for up to 70 years based upon examination at the UT Southwestern Alzheimer's Disease Center. The mean age of subjects is 70 years, with a range from 65-75 years of age. Blood samples were collected between 2012 and 2013 into 8.5 ml SST, BD Vacutainer tubes. Blood was allowed to clot for a minimum of 30 minutes at room temperature, prior to centrifugation (1318 x g (3400 rpm) for 10 minutes at room temperature). These samples have undergone one freeze-thaw prior to their constitution into a pool for assay cross-validation.



Selecting PDBP Biosamples

To select PDBP biosamples and create a biosample order queue:

  1. Request a new account with the PDBP DMR (if you don't already have one)
  2. Login to the DMR using your account and select the Query module
  3. Once in the Query module - select the NINDS Biorepository Sample Catalog and any other form structure (i.e. MDS-UPDRS) you would like to use to help refine your sample selection
  4. Sort biosamples by any of the selection criteria (select criteria tab) -subject information, sample information, quality control
  5. Select a biosample by clicking on the corresponding "system assigned ID for an orderable biosample"
  6. When you have finished your biosample(s) selection, go to the Account Management tab and select "Order Manager"
  7. At this stage you may further refine your Biomaterials Queue prior to selecting the biosample(s). Once your review is complete and biosamples selected, create your order by hitting the "add to order" button.
  8. A new order alert will appear. Select this notification (the notification will be seen above the "add to order" button).
  9. You will now be asked to upload 2 documents; 1) your X01 application and 2) supporting documentation, i.e. upload a signed (investigator and institutional official) NINDS Human Genetics Repository Material Transfer Agreement for Biospecimens.
  10. Provide a shipping address and either save and exit or save and submit the order.
  11. Comments and decisions from the NINDS PDBP Biospecimen Resource Acquisition Committee (BRAC) will be communicated directly with the requestor through email correspondence and through the Order Manager under "Admin Orders".
  12. If your biospecimen(s) request is approved, the NINDS Repository staff will work with you to organize the receipt of the biospecimen(s).

For further details on biospecimen ordering, please click here to assist you in creating an order for the NINDS Biorepository through the PDBP DMR. Please view the webinar located here to assist you in creating an order for biosamples.



NINDS Repository Contacts

Chi Tarn, Ph.D.
Principal Investigator, NINDS Repository
DNA and cell based collections
Email:

Gregor Balaburski, Ph.D.
Co-Principal Investigator, NINDS Repository
Biomarker biospecimen collections including PDBP and BioFIND
Email: